Talking gratitude, storms and shhhh!

Do you know this saying? It says - “life isn’t about waiting for the storms to pass, it’s about learning to dance in the rain”. Now I admit to liking the odd quote that can tell a truth in verse or image that opens up a new way of thinking. And in this week, post op, the storms have been raging in this part of the world, both real and metaphorical. So it strikes me that not only have some of these actual storms come with a red warning, I’ve also been reminded that dancing is not my strength either. I’m glad no one reminded me of this quote or my reply might have been brief and to the point ( you know, two words, second one….). 

Ten days post op and I’m healing and some pain receding. At times I’ve been able to marvel at the body’s ability to recover and at other times I’m reminded that our bodies are complex ecosystems and one wrong move and the repercussions are widespread. This weeks smorgasbord of symptoms has included severe nerve pain, bladder infection and the old favourite, constipation. 

Some days I think constipation is the worst thing to cope with. I’ve been toying with the idea of setting up a podcast called “Talking shite”.

In Scotland ( and Ireland too I believe)  it’s a riposte to people we think are talking nonsense, occasionally fond but mostly not! And the word shite is an adjective as well as a verb. Now I don’t suggest you try this out in polite society ( !?) or say-at a job interview but in the right context it can be liberating if rude! And some light hearted banter and information about constipation is so needed. It’s the thing no one wants to talk about and yet can make you quite ill, for some it causes acute illness and should never be ignored. So if you live with chronic pain and need to counteract the effects of opioids on the bowel join me in being open about talking shite and don’t be afraid to ask for help! You aren’t alone…

Meanwhile in other storm news, I’ve to have another scan and likely biopsy on something the CT showed. I’m unsure of details but will find out more this week ahead. I’m taking a step at a time and should get all results early March. And the weather based storms have made it pretty hard to dance or even stand up straight so instead I’m reading, doing a little writing and contemplating trying cross stitch. I suspect the afore mentioned adjective may be employed during that process of learning and experiment but I will try to retain my beginners mind of curiosity, not judgement.

In many ways it’s gratitude I feel this week, in spite of the storms, for the kindness and love of family and friends and the many ways they have reached out. It’s hard to express how much it helps, it really does. 

I feel less alone in this storm and that’s getting me and Andrew through. 

With love and thanks to you all. 

Audrey

The Kingdom of the Sick

 The Kingdom of the Sick

Well it’s official, I have another cancer in my left ( reconstructed breast). I’m still taking exemestane and having regular zometa infusions to help prevent  the return of the cancer but nonetheless I’m back to hospital on Thursday 10 February for a wide local excision. So I left the breast clinic with a pen drawing on my boob of the planned excision and trying to puzzle that this time the tumour is triple negative this time. This means none of the hormone based treatments or herceptin work to treat or prevent the triple negative tumours. It’s complex to understand but for more information see 

https://breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/primary-breast-cancer/triple-negative-breast-cancer

My bone scan was clear which was good news and I get the CT for an all over check up, on Wednesday. It’s the day before the operation but at least there will be some preliminary results. So this week is busy. 

As I was planning how to approach the CT I was interested to see mention of getting to the hospital ( for 8.45- a challenge as a wheelchair user who lives with chronic pain). The MACS committee I’m part of has been actively trying to improve information and options for disabled people getting to hospital. I read on, please drink 1.5 litres of water mixed with an attached drink 60-90 minutes before. OK, set alarm it’s going to be an early one. And just over the page it says the parking is reduced please do take public transport. 

I picture someone, a litre and a half in the tank, chugging slowly across the city on the number 19 bus at the rush hour. I cross my legs tightly and thank goodness I’m close to the hospital. Can you imagine?! It’s not a joined up approach is it and yet all these instructions are in the one letter! This is why travel to healthcare settings is important and yet so often ignored. For many that would be a missed appointment, the final stressor that tips them over the edge between coping and not.

I have been asked constantly in the last few weeks -“how are you?”. I don’t know would be the honest answer. I don’t cry like Cara the lurcher. She had a tooth removed yesterday and she whimpered for several hours and howled like a trapped beast when our daughter asked her how she was. She likes you to get the full force of her pain, grief and disgust at her treatment. In fact we shared so much compassion last night that we all shared the bed too, two adults, a big cat and an upset three legged dog. ( don’t judge!) I think we managed some sleep! It’s rare the cat has been ill or hurt I’m relieved to say, but when he is upset, he goes under the bed, right at the back and stays there till he needs something or feels better. I’m more in tune with the cat. I don’t cry much but  I do tip into sleep and not always when it’s convenient! 

I had a really lovely birthday last week which made me tearful for good reasons. I am literally festooned with flowers. A small selection shown here! And as if that wasn’t enough we went to the Botanic gardens in the afternoon, setting out in winter sun to see the snowdrops. They were glorious and reminder that spring flowers will soon follow. But caught in a snow and hail squall suddenly was the additional reminder that winter was still in charge. 

Davie, our grandson, free of perceptions of seasons, found joy in capturing snow on his tongue. Seeing the world with the beginners or child’s mind is how best to find happiness.

I’m isolating now, pre-op but I do find myself wanting to be in contact with others who are ill. Those who get the negotiations with the future, the anticipatory loss and grief, the uncertainty and feeling unable to plan a trip or a holiday until the treatment plan is clearer. With those others who try to keep their pain from those they love and who want to savour every chance to hug them and hold them close and foolishly try to hold in the tears. There is a comfort and desperation almost in those hugs, can you store up a lifetime of them and wonder if telling them again and again that you love them isn’t almost counter productive. 

And yet in the kingdom of the sick, love is our currency.